Promoting Excellence : ALS Report to the Field : Bereavement


аи Executive Summary
аиаReport to the Field

Identification of Existing Resources

Bereavement occurs in many medical conditions with a loss of a body part or function. Onset of bereavement in patients with ALS is unique because there is a progressive loss of strength and function, with no stable time for adaptation to these losses. For some patients, bereavement starts at the time of diagnosis. Others grieve as they lose their ability to function and lead a normal life. Both the patient and caregivers grieve the loss of their future together.

For caregivers, bereavement is also progressive, as they grieve the loss of life as they knew it. Therefore, caregivers grieve for the loss of function in patients, and also grieve the loss of their own independence. Little is known about the process of bereavement in the caregivers of patients with ALS. A detailed overview of the current practices and existing resources about bereavement at the end of life is summarized in Appendix B.

Identification of Existing Gaps

Little published information exists to guide patients with ALS, caregivers and health care providers through the bereavement process. The majority of information available on bereavement is not specific to ALS, and few books include chapters devoted to bereavement.

Issues in the bereavement process that may be unique to ALS have not been well studied. Little is known about how to provide support and services for the caregivers of patients with ALS as they experience this type of bereavement. For example, it is unclear how to optimally work with caregivers and help them come to terms with resentment or guilt, which often surface during the grieving process.

Recommendations to the Field

Practice Recommendations

  • Offer bereavement support, informally or formally, for the patient and caregiver during the clinic visit.
  • Offer bereavement support for the caregiver after the death of the patient, including letters of condolence at the time of death.

Research Recommendations

  • Determine the scope of bereavement in ALS and whether there are differences between ALS and other diseases, such as cancer.
  • Assess whether specialized ALS support groups are needed and if they confer specific benefits.

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Promoting Excellence in End-of-Life Care was a national program of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit for more resources.

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